From Exceeding Physical Limits to Losing Mobility: Tracy’s Journey with ALS
Tracy, 55, lives in Strathroy, Ontario, just outside London, where she attends the ALS clinic. Her life looks completely different today than it once did. But before her diagnosis, she was an adventurer who thrived on pushing her physical limits.
A Life Built on Challenge and Adventure
“I always enjoyed physical challenges. I loved pushing myself and feeling like I was succeeding,” she says. Today, she types on her phone or speaks through a communication device because she can no longer use her voice.
“I’ve also traveled a lot for the same reason. I believe that both physical challenges and travel help you grow as a person.”
One of her greatest adventures came when she and a friend, also a retired colleague, set out on an ambitious trek in Nepal. “We actually had to go to Lake Gokyo because of the weather,” she explains, describing the alternative climb they undertook when conditions forced a change of plans.
Early Warning Signs
Shortly before the adventure in Nepal, Tracy began experiencing strange symptoms that she couldn’t quite explain.
“I remember walking through the airport and my feet slapping the floor,” she recalls. “After drinking just one or two drinks, I noticed that my speech was slurred. I also had some difficulty swallowing and some weakness in my right hand. All very minor, but enough to worry me.”
A Frustrating Search for Answers
At home, Tracy went to her family doctor, who dismissed her concerns. He attributed the speech changes to age, the hand problems to carpal tunnel syndrome, and the swallowing difficulties to acid reflux. Her doctor initially refused to refer her to a neurologist.
Tracy had done her own research, and when she expressed concern that it might be ALS, her doctor told her that even if that were true, there was nothing they could do because the disease was fatal. He added that there was only one medicine available and he could prescribe it — information that was not accurate.
“I was extremely frustrated dealing with my primary care doctor, a story shared by so many other ALS patients,” she says.
After many follow-up calls requesting a referral, her doctor suggested she see a speech therapist to obtain a report that would support a referral. Tracy did so at her own expense. The speech therapist was concerned that her speech difficulties might indicate something serious, and after receiving the report, Tracy’s doctor eventually referred her to a local neurologist.
Diagnosis
ALS was suspected, and Tracy was quickly sent to the ALS clinic at the London Health Sciences Center, where tests were carried out that ruled out all other possibilities. This led to the exclusionary diagnosis of ALS — there is no single definitive test for the disease.
Tracy’s story highlights the challenges many ALS patients face in obtaining a timely diagnosis, from dismissed symptoms to the emotional toll of navigating a healthcare system that can be slow to recognize the early signs of a devastating disease.
